My 11 years old son has experienced severe pain in his calf muscles for 4 times during last 4 years. The pain is so much that he is not able to walk. This pain generally has occurred after 3-5 days of fever. After two days episode of this severe pain, his pain gradually gets away without any medications. This happens almost once a year. When his CPK and CPK(MB) levels were checked through blood samples, they were extremely high during all these four occassions. Thus time CPK levels went upto 11,000(eleven thousand) also. The child is otherwise very very healthy and active. He plays cricket, football, etc. Shown him to Ortho, Neuro and Neuro (Muscles Specialist). They say he is fine when examined clinically. Got EMG done of his legs. Everything comes out normal. really really worried for my child... Please Guide and HELP how do I get clarity on this. Are there any further investigations to be done?????
Has your son seen a PCP or cardiology or anyone to that extent to be evaluated for the high CPK levels? I am not sure how the two are linked but I would suggest digging into the doctors to see what the cause of the high levels are.
In an otherwise normal child, a single episode of calf pain and increased CPK is almost certainly the result of a viral infection (like influenza), and should resolve on its own. I suppose bad luck could strike twice, or maybe maybe three times, but that this has happened four times is concerning to me that there may be some kind of underlying muscle or metabolic issue going on. This would be very rare, and I think would need to be investigated by a university specialist (usually a neurologist who specializes in diseases of muscle or mitochondrial disease or metabolic disease.) Workup may not be easy or straightforward, and may involve a muscle biopsy or very high-tech tests that are really beyond my expertise.
You mentioned he had seen a neuro (muscle) specialist-- was that after 4 episodes? Did all 4 episodes have documented CPK rises, and does his CPK always return to normal afterwards? I would head back to that neuro (muscle) person first. If he or she can't handle it, he or she would know who would be a good resource for a referral.
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